Ken Allott talks about his diagnosis of MND and his contribution to the DIPEx website, Healthtalkonline:
Since I was diagnosed with MND I have joined two choirs, Chaired the local rail user group and I frequently give talks and write articles for local publications.
Life does not end with a diagnosis. You can still do things even if you are severely disabled. Whilst it is difficult for me to get around and I need lots of equipment I am by no means house-bound. Indeed both myself and my equipment have enjoyed many European holidays together, and I feel that’s an important message to get across.
Receiving a diagnosis like MND is devastating and raises many questions about how it will affect you and your family. Having been through this I can really see the value of a site like DIPEx which shows people’s personal experiences of living with a disease.
Over a year ago I was approached by DIPEx as they were adding MND to the long list of diseases the website covered. I was happy to be involved, especially if my story and my experience helped others.
I had no idea what MND was when I was diagnosed with it. I didn’t know that it would mean I would end up in a wheelchair, unable to move my arms and needing to rely on my wife for the many things I previously took for granted.
My illness has had a bad effect on my wife. She is now a carer 24 hours a day which is very hard. I worry what will happen to her when I’m gone. We are using all our life savings and her pension to buy vital pieces of equipment. The longer I’m alive, the poorer she gets.
Had there been something like DIPEx I’m sure I would have logged on out of curiosity. It is useful for people to access information about living with a disease. I think it’s valuable to see the different coping strategies people employ.
An interviewer from DIPEx came to my house and asked me all types of questions. I didn’t find it particularly hard to talk about my experiences with the disease. Talking is something I do a lot of. However, looking back over my original interview a year ago I can see how much further I have progressed with MND.
I am interested in finding out more about how I am going to die so I will be certainly looking at interviews which explore the aspect of death. Why live in ignorance and fear?
A site like this puts a human face on the illness, you can see how it affects people and it can help you prepare for your own journey. I am pleased that my contribution and story may help others who are coming to terms with a diagnosis of MND, or indeed, any terminal condition.
To view the MND section of Healthtalkonline, click here.